The Care We Need

Sitting here today, I think about the myriad ailments that I feel as a 50-plus-year-old man with Parkinson’s. For instance, my back aches pretty much every day, and I measure a successful morning in getting out of bed without much “oomph” and balance assistance from my bookcase. I’ve also been dragging around my left leg for about 2 weeks since I pulled my hamstring. Oh yeah, I think I did that in my sleep. I guess you can say that it is what it is.

Additionally, this week, I’ve been slammed with seasonal allergies, which have always sucked, but as I don’t mix over-the-counter medicines with my Parkinson’s meds, the nasal drainage and exhaustion feel even worse. Let’s not even get started with the heat and humidity that my body no longer tolerates, nor does air conditioning effectively alleviate it. That’s a big “Grrr.”

What’s more, my levodopa/carbidopa doesn’t stop my tremors as quickly or effectively as I would like. This leads to earthquake-style left leg shakes every 2 to 3 hours. Oh, and let’s not forget the dystonia-filled Frankenstein leg! That’s a bigger “Grrr!”

Nevertheless, I’m one of the fortunate ones as I have routine access to a neurologist for my Parkinson’s issues, and I use it!

Patients without specialized care

According to the Michael J. Fox Foundation, this is a major problem for many of my fellow people with Parkinson’s. The 2019 study reported how all populations, especially women, underrepresented communities, and rural populations were over-relying on primary care physicians or not getting any medical help in that calendar year.¹

In total, nearly half of all people with Parkinson’s fell into this at-risk category. That’s the biggest “Grrr!”

Examining the results

A study is a collection of numbers that always ends with “more research is needed.” Thus, our next study needs to figure out more of the whys, while repeating the quest for definitive answers. For instance, these questions:

• Does a complicated process create gaps in navigating the healthcare system without additional assistance?
• Does a lack of a specialist or enough specialists available in the given area to get effective care regularly make finding care difficult?
• Does adequate transportation/support to get to and from appointments make finding care difficult?
• Do high deductible or no insurance policies play into the decision to get care?
• Does Fear of treatment / additional diagnosis play into the decision to get care for Parkinson’s?

Depending on the answers, we pose more questions.

The Parkinson's community

In reading your stories and comments, I have seen a lot of subjective, anecdotal evidence that suggests many of these things. Knowing how I, a person with solid access to care, still has to wrestle with the Parkinson’s crap sandwich, I feel even more committed to encouraging people to speak out to other people in the community to keep making a difference. After all, everyone is entitled to adequate healthcare.

If you’re reading this, you have either felt or seen the symptoms and effects of Parkinson’s. You’ve seen how it affects patients, families, communities, finances, and medical resources. Thus, our job is to help make a difference in our own best and most effective way.

Suggestions

Here are the things we can do for one another in our community:

• When you see someone with Parkinson’s pushing through their obstacles, celebrate them. From a social media like to a pat on the back, it’s all good.
• If a person is struggling, be there in the best way that you can. It’s not always about solving problems. A lot of times, it’s just about listening.
• Destigmatize mental illness. We all have tough times. Here, depression and anxiety are not about weakness. Letting people know that they have an outlet to talk or that they can get professional help without judgment goes a long way to a better tomorrow.
• Support causes that provide social assistance. Whether it’s choosing to be a personal assistant, donating, or spreading the word that change needs to come, any help is good help.
• Share something personal.

This site is an all-encompassing collection of stories, research, information, advocates, and hope. I thank you for being a part of it in whatever way that you feel directed to be the difference. Each person you inspire and assist to get the proper help they need is a victory to celebrate!

The help you give me

Here, I can say from personal experience, as my maladies seem to increase while my time until Deep Brain Stimulation (DBS) decreases, it is the little things like the mentions of how well you responded to DBS or just a simple thanks for sharing my story that is getting me through the toughest third of my 5-month process. To say that I couldn’t do this without you is not lip service.

By the time you read this, I will have my DBS gear placed. Nevertheless, in the meantime, those 5 ways to make a difference will keep me (and those closest to me) moving forward. For this, I thank you. I know that the other people you are there for also appreciate you. We may not always post a billboard in Times Square, but from the bottom of our hearts, it’s shining intently.

Hence, I give you this mega output of gratitude on this billboard!